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Archives for: August 20th, 2019

NORD’s Mary Dunkle Comments on Diagnosis Challenges and Urges Caution on Using Internet Sources in New Article

Written by Laura Mullen on August 20, 2019

In a recent article published by HealthDay entitled “‘Dr. Google’ Helps Some Patients Diagnose a Rare Disease,” NORD’s Mary Dunkle notes common reasons for rare disease diagnosis delays and cautions patients and caregivers regarding online sources, recommending that people “use only trusted sources such as the U.S. National Institutes of… Read More

NORD Expands and Enhances its Rare Disease Database®, a Primary Resource for Millions of People Affected by Rare Diseases

Written by Laura Mullen on January 3, 2019

Washington, D.C., January 3, 2019 – Today, the National Organization for Rare Disorders (NORD) announced the completion of extensive additions and improvements to its Rare Disease Database, which serves as a valuable resource for patients, families and caregivers in need of easy-to-understand information about rare diseases. The enhancements… Read More

NORD 35th Anniversary Blog Series: 1990s-2000s

Written by Jennifer Huron on June 25, 2018

2018 is a big year for the rare disease community – NORD is celebrating its 35th anniversary.  For the past 35 years, NORD has taken pride in being the rare disease community’s biggest advocate.  Our policy, research and other efforts have played a significant… Read More

TAKE ACTION: Join NORD & Over 100 Patient Organizations in Supporting the RARE Act

Written by Lisa Sencen on April 18, 2018
An exciting new piece of legislation known as the RARE Act (Rare disease Advancement, Research, and Education Act) of 2018 (H.R.5115) was recently introduced by Congressmen Carson and Costello. This legislation would greatly help the rare disease community by:
  • Increasing rare disease research funding at the National Institutes of Health (NIH) by authorizing an additional… Read More

NORD Reaction to Recently-Enacted Government Spending Bill

Written by Lisa Sencen on March 29, 2018

After months of debate, Congress passed an omnibus spending bill last week to fund the government through September 30, 2018. Within this legislation, there are both exciting investments in critical programs for the rare disease community as well as disappointing policy omissions from the final package.

For example, we had greatly… Read More